Tuesday, August 14, 2012

Spine and Leg Pain Update, Now with 75% More Glitter and Spoons.

I'm bummed not to be posting a glittering Treasure Nest post, but I can't deal with the prettying up and am too worn out to go round up a model. But I was tagged with the glitter silliness on Facebook and it brought the giggles. Although I do take issue with the word 'girl'... My sparkles set off my crows' feet beautifully.

I saw my pain specialist this morning, and to my immense relief he didn't suggest repeating the epidurals just once more. A small thing in my brain that's been curled up quivering in a dark corner since the procedure had been afraid he'd suggest we retry it. The small thing is stupid, and my doctor is not. Thanks be to the shiny heavens. He wants to insert a spinal cord stimulator to block the nerve pain signals. I'll get a trial in a few weeks and then a long term thing if that goes well. I'm feeling hopeful and excited about my physical life for the first time since the surgery. I won't have any activity limitations beyond no contact sports, so teaching Molly to roller skate is on, though I can't do roller derby. Yes, about five years ago I entertained the thought for exactly long enough to tell Shane about it. He reminded me that I could sneeze and be in bed with back knots for days. It's quite odd to think that there was a time when I could forget between episodes that I had back troubles.

It's such a constant now; it determines every choice I make. One day last week, I ate only goldfish crackers and bananas all day because I couldn't stand long enough to throw together a sandwich. I cancel at least 50% of any non-doctor plans. A few years back, the internet took hold of a great metaphor illustrating living with disabilities. I first discovered the Spoon Story at this post by Alexis Yael. She "counts her spoons" as a parent of a child with ASD who also deals with asthma and SAD/depression. The blogging and social media community quickly coined the term spoonie and uses it as a supportive, inclusive way to identify posts and writers expressing their limitations. Between reading Lexie's post and the proliferation of #spoonie on Twitter et al, the term evolved in my brain as a cool allegory for my depression/anxiety to a totally necessary tool that helps me cope with my chronic pain.

Right now, I don't have very many spoons on an average day. I usually have enough for one short errand, for example. Several days last week, I had nothing- not enough for holding up conversation with Molly. My hollow-village, the Grandies and the neighbors (the Dad is a Spoonie brother who's helped me through this tremendously, being my only close friend who intimately understands chronic pain) were safety nets as always. Now the intense flare up has settled into my normal level of discomfort. If I'm mindful, I have enough spoons to keep myself comfortable and be an okay companion to Molly. I'm really {really!} looking forward to school starting this Friday. I'll get more rest and be a happier mama, and the Bird has been really graceful and patient with me and very much deserves a more fun mom.

Love with glitter sprinkles to my support system, and my fellow Spoonies all over the world learning the art and science of self care. Thank you to teachers and guides and babysitters, to nurses and doctors and pharmacists and bleaders and Sesame Street.

4 comments:

  1. Well, but at birth a female would be referred to as a girl. Right?

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  2. Also, sorry to comment just on that one small thing... I was commenting AS I read, you see. I hope the new trial goes as hoped!

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    1. Hmmm. Good argument. I like the sound of 'girl', but to me it's always seemed trivializing. I love 'womyn' the most, actually. It goes with my not shaving and long swirly skirts;)

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  3. I'm still a riot grrl at heart, but the inclusion of the 'i' annoys me, too.

    I was so proud of myself this past weekend that I didn't push through being sick and I let everyone go to NYC without me and stayed home and slept! Being sick sucks. But I'm getting way better at conserving spoons. Its ironic you posted that link, because of the similar yet different experience, for me.

    I send you love and healing <3

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